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Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Beyond Last Words: Communicating With Dying Children Who Have Trouble Speaking
Publisher
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Psycho-oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Creator
An entity primarily responsible for making the resource
Ceilidh Eaton Russell; Bouffet E; Brownstone D; Caelyn Kaise
Description
An account of the resource
Purpose
The majority of children whose brain tumors are resistant to treatment, lose their ability to speak and write due to progressive impairment and/or fatigue. Compromised communication can be emotionally devastating for the whole family, as children struggle to express, and caregivers work to decipher the child’s needs, hopes, fears and feelings. Although tools exist to support communication, children’s unpredictably changing function limits their accessibility and utility over time. This presentation will explore creative strategies that families used and adapted to engage in, and maintain meaningful communication with dying children who had trouble speaking.
Methods
Bereaved parents of 14 children were recruited from the Brain Tumour Program at the Hospital for Sick Children in Toronto. Their children, who had compromised communicative abilities, ranged in age from 4 to 16 years old when they died between 6 months and 3 years prior. Semi-structured interviews explored what and how they had communicated, and were digitally recorded, transcribed and coded using NVIVO software to facilitate thematic analysis. Parents’ priorities, insights and communication strategies were thematically organized to create an accessible, useful handbook to support family communication with dying children who have trouble speaking.
Results
Parents described a variety of tools that they used to support communication, emphasizing the need to introduce them before it became too difficult for the child to learn to use a new tool. Given the progressive, unpredictable functional changes these children experienced, all families ultimately relied on asking children a series of increasingly specific “yes” or “no” questions. Although this required immense patience, it allowed them to communicate about any topic, unrestricted by the contents of a particular tool. Most importantly, parents explained that whereas tools could be disruptive, asking these questions maintained the personal, intimate nature of their interactions.
Conclusions
In response to parents’ urging, our team developing “Staying Connected: a guide for families when a sick child has trouble communicating” based on their experiences with communicative and psychosocial issues as their children’s abilities changed. Among the tools included in this book is a map to guide parents as they learn to use “yes” or “no” questions to understand their children’s needs, fears and feelings. Clinicians and family members can use these tools to maintain communication and connection when a child has trouble speaking, at any point along the trajectory of illness.
Research Implications
Anecdotal evidence suggests that caregivers’ distress may be lessened when they have a plan for communication, should their child lose the ability to speak. Future research could explore how this handbook, including experiences and advice from other parents as well as the communication strategies, benefits caregivers of children with brain tumours. Children’s quality of life is likely also improved by these opportunities to communicate, to feel heard and comforted by loved ones. These benefits are likely to extend to children and families living with other life-threatening illnesses, or new communication challenges, meriting further exploration.
Clinical Implications
Learning to use "yes" and "no" questions enables families to maintain precious, intimate connections, however it requires patience and practice. Families need clinicians to prepare them for the possibility that the child may struggle to communicate, so that they have as much time and capacity as possible, to learn new communication strategies. Developing a rapport early on allows us to open up a dialogue with families about communicating with the child; this dialogue can focus initially on the diagnosis and treatment, and evolve into discussions about life, death, and their own care and wishes at the end of life.
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Bouffet E
Brownstone D
Caelyn Kaise
Ceilidh Eaton Russell
June 2016 List
Psycho-Oncology
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
May 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2019 List
URL Address
<a href="http://doi.org/10.1080/07481187.2018.1526829" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/07481187.2018.1526829</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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The experiences of physicians, nurses, and social workers providing end-of-life care in a pediatric acute-care hospital
Publisher
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Death Studies
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Creator
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Muskat B; Greenblatt A; Anthony S; Beaune L; Hubley P; Newman C; Brownstone D; Rapoport A
Identifier
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<a href="http://doi.org/10.1080/07481187.2018.1526829" target="_blank" rel="noreferrer noopener">10.1080/07481187.2018.1526829</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Description
An account of the resource
This qualitative study explored the experiences of social workers, nurses, and physicians providing end-of-life care to children in a pediatric acute-care hospital setting. Findings demonstrated that participants experienced both professional and personal impacts of their work and employed various coping strategies under each of these domains. The acute-care setting was found to create unique challenges in providing end-of-life care. Implications for policy and practice include promotion of both individual and institutional-level coping strategies and supports that meet the various needs of staff. Implications for future research include a nuanced examination of differences in experiences among nurses, social workers, and physicians.
2019
Anthony S
Beaune L
Brownstone D
Death studies
Greenblatt A
Hubley P
May 2019 List
Muskat B
Newman C
Rapoport A
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2017 List
URL Address
http://www.ncbi.nlm.nih.gov/pubmed/28398174
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
The Experiences Of Pediatric Social Workers Providing End-of-life Care
Publisher
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Social Work In Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Coping; End Of Life Care; Hospital Social Work; Pediatrics
Creator
An entity primarily responsible for making the resource
Muskat Barbara; Brownstone D; Greenblatt Andrea
Description
An account of the resource
Pediatric social workers working in acute care hospital settings may care for children and their families in end-of-life circumstances. This qualitative study is part of a larger study focusing on the experiences of health care providers working with dying children. This study consisted of 9 semi-structured interviews of acute care pediatric social workers who work with dying children and their families. Themes included the role of social work with dying children, the impact of their work and coping strategies. Authors suggest a hospital-worker partnership in supporting staff and promotion of supportive resources.
Identifier
An unambiguous reference to the resource within a given context
10.1080/00981389.2017.1302034
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Brownstone D
Coping
End Of Life Care
Greenblatt Andrea
hospital social work
June 2017 List
Muskat Barbara
Pediatrics
Social Work in Health Care